Update February 10, 2010: Disparities in breast cancer rates did not close over the 12-year period ending in 2004, according to new research.

Update April 7, 2010: Black women have poorer outcomes than White women with the same stage breast cancers.

Lots of concern that the new breast cancer screening advice will hurt Black women. The advice to stop routine mammogram screening before age 50 – to avoid the negative effects of false positive findings – means Black women might not get screened during years they are more likely to get breast cancer than White women. Black women die from breast cancer in the ages 35-44 at twice the rate of White women. (The American Cancer Society disagrees with the new advice.)

Although breast cancer is more common at older ages, women who develop breast cancer below the age of 50 years are more likely to have more aggressive disease and a higher mortality rate. This is particularly true for African American women who have the highest mortality rates from breast cancer in the 40-49 year age range.

Some of the criticism is like the debate over pedophilia – we should have more punishment, regardless of what the current policy is – so any advice against more screening is bad. Vlogger Rene Syler is quoted as saying, for example, “So I’m a little upset that a government panel, made of very smart people, would take a disease like this and boil it down to statistics.”

I strongly disagree with the notion that preventing the psychological harms and inconvenience caused by false-positive screening results, as implied in the recommendations, outweigh the importance of saving one woman’s life. We should not be in the business of rationing care.

Rationing health care is not the question (that’s a given). And advice to the public about disease screening has to be based on statistics. As the NY Times said,

The task force acknowledges that mammography saves lives among women in their 40s. But it estimates that more than 1,900 women have to be screened for a decade to save a single life. Among women in their 50s, when breast cancer is more common, only about 1,300 women have to be screened; among women in their 60s, only 377.

The helpful advice that the decision is an individual one, e.g., “The decision about whether to be screened is properly left to each woman — to determine with the help of her doctor what risks and benefits she is most comfortable accepting,” doesn’t mean not to use statistics in the decision, but that the many variables affecting the risks for individuals are too complex to boil down to a generic recommendation. Unfortunately, the individual consultation approach relies on patients and doctors to be well informed about all the variables involved – if they are known – so the result is better educated and informed people, and those with better doctors, are more likely to make the right decisions, exacerbating existing inequality in the healthcare system. Poor and minority women, and those without a “usual” source of medical care, are less likely to get mammograms.

The reasonable concern is that Black women’s experience was not adequately considered in the new recommendations, which could lead to denial of insurance reimbursement, for example.

Historically, researchers have not studied Black women. Black women have not been at the forefront of the breast cancer movement, and our unique health experiences and outcomes have not been factored into policy and advocacy decisions. These recommendations completely ignore the impact of well-known breast cancer disparities affecting us.

The risk of overdiagnosis – that is, finding and treating cancers that aren’t as dangerous as the treatments themselves – is real but very difficult to quantify. But it seems less likely to be a problem for Black women given the profile of breast cancers and healthcare they experience.

The current flap probably will raise doubt and distrust, which are serious barriers to receiving healthcare in general. It’s one problem with a vastly unequal healthcare system: some people with health insurance have a more-is-better attitude, and are at risk of overdiagnosis and over-“care” — while others are marginalized and underserved, and tend to mistrust doctors (partly because they don’t “have” a doctor).

Some of the backlash against the new advice comes from those with major investments in programs to increase screening. Still, for Black women, I have to believe the greater issue remains increasing access to and use of cancer screening, so the emphasis should remain on promoting screening. Note that minorities in general suffer greater survival disparities for those cancers that can be treated if screened and diagnosed early (like breast and prostate cancer). A study from last summer concluded:

We should continue to support those interventions that increase mammography use among the medically underserved by addressing the barriers such as cost, language and acculturation limitations, deficits in knowledge and cultural beliefs, literacy and health system barriers such as insurance and having a source regular of medical care. Addressing disparities in the diagnostic and cancer treatment process should also be a priority in order to affect significant change in health outcomes among the underserved.

Heightened awareness of breast cancer risk in the past decades has led to an increase in the number of women undergoing mammography for screening, leading to detection of cancers in earlier stages and a resultant improvement in survival rates. Knowledge is power and together we can make a difference! Happy Holidays!